Editor’s Note: The following article appeared in the July 2013 issue of the SLO Journal Plus, the Magazine of the Central Coast
Meet Frank Kalman: Giving Hope, Health and Happiness to Kids with Cancer
“The term hope is so often thrown around when it comes to cancer,” said Frank Kalman, who admits he never really knew what that meant until he lost it. “It was the darkest place I had even been.” Today, more than 13 later, Kalman lives in the light, sharing what he learned with as many parents as he can, mostly through the nonprofit he founded, Kids’ Cancer Research Foundation (KCRF). This is his story.
When his 12-year-old daughter was diagnosed with neuroblastoma or NB (a cancer of the nerve cells outside the brain) and did not respond to treatments, “It was almost more than I could take,” said Kalman.
So Frank and his wife Terry got proactive in a hurry. Terry became the rock-hard foundation for the family, freeing up Frank to become the research man (which required tons of time and travel). Over the next decade, Calli would endure—with remarkable courage, resilience, and grace—3 major surgeries, 50 rounds of chemotherapy, 25 rounds of radiation, 6 different treatments, t-cell therapy, and a bone biopsy.
She lived at 5 different treatment centers, and lost her gorgeous red hair 3 times. Today, Calli is 24, a recent graduate of Cal Poly and a very recent bride. She has been cancer-free for more than 3 years.
What her father discovered soon after Calli’s diagnosis can be summed up in two remarkable numbers: 2 and 69. According to Surveillance Epidemiology and End Results (SEER) cancer statistics, children with cancer lose an average of 69 years of life (in other words, they die while they are still children); yet only 2% of the millions raised to fight cancer goes to pediatric cancer research. Frank has vowed to change all that with his 2-year-old foundation, Kids’ Cancer Research Foundation (visit www.EndKidsCancer.org).
You see, he explains, up until recently, radiation, chemo, and surgery were the only weapons we had to fight cancer, and two of these approaches are carcinogenic! But now there is a new approach: harnessing the immune system to kill cancer, a biological treatment being forwarded by an organization called New Approaches to Neuroblastoma Therapy (NANT). Headed by Dr. Robert Seeger, NANT is a consortium of 20 top medical centers and children’s hospitals whose researchers work together to develop and test novel therapies for high-risk and relapsed NB. Dr. Seeger is also the chairman of the medical review board for KCRF.
Kalman’s foundation supports NANT and also works to identify the most promising new therapies out there, and get the public to support them. NANT’s work includes a number of clinical trials, and it was one of these that Kalman “stumbled upon” in his search for something that would save his daughter. After years of traditional therapies, Calli’s condition kept coming back, and she stopped responding to all of them. By this time, Kalman had achieved a more global perspective and had amassed a vast number of resources. He began to methodically investigate them. “When treatments don’t work, you work harder to find ones that will,” he said.
The treatment that cured Calli was a clinical trial of a new drug called Revlimid that research doctors happened to discover at Memorial Sloan Kettering Cancer Center in New York. That was followed by a brand new vaccine (also a clinical trial) and also offered at Memorial Sloan Kettering.
It was while staying at Ronald McDonald House in New York that the Kalman family met the many families struggling to find effective treatments for their children with cancer. Kalman said that 85% of the parents he spoke with told him their children were misdiagnosed, had received the “wrong” therapies, and some of them had lost their children. Hearing their stories is what prompted Frank to form KCRF two years ago.
“For all those parents who ask themselves, ‘What do you do when your child gets cancer?’ I can tell them,” he says.
Frank has visited most of the top pediatric cancer centers in the country, attended countless conferences, and met the top investigators fighting NB, and he has recruited some as advisors for his foundation.
To date, KCRF has raised enough money and gained enough public support to fund a grant that supports a cutting-edge immunotherapy clinical trial called CAR T-Cell therapy (initial results were published in the October 2011 issue of Blood, a medical journal.)
Recently, the National Institute of Health (NIH) became convinced that this new therapy was worthy of a million-dollar investment.
“That first grant was a huge home-run for us,” said Kalman. Frank is determined to make life easier for other parents looking for treatments, and to provide them with a place they can turn to
for all the latest treatments and resources. Kids’ Cancer Research Foundation is that place, and it’s also the grateful recipient of the important dollars needed to fill the research gap in pediatric oncology.
“There’s a big disconnect between the people who want to help, and where they should give their money,” said Kalman. “Our goal for 2013 is to raise $500,000 to fund three translational research projects and two small clinical trials for NB,” he said.
And so, while Calli is reluctant to be “the face of cancer,” (preferring to live her nowhealthy life in private), her father has no hesitation about being seen and heard as the go-to guy for kids’ cancer.
When it comes to the hope, however, he credits the doctors he worked with as the primary source of that during his darkest hours (two of whom are pictured and named here). There are too many of them to list, but Kalman told us that one of the funniest and most brilliant of them all, Dr. Soldano Ferrone of Harvard School of Medicine, said this (in response to Frank’s question about what he did for fun): “I work,” he replied. “I can’t take time off knowing that children are dying,” The same might be said of Frank himself.
In a recent address that Calli delivered to an audience comprised of parents and children fighting cancer, she ended her moving talk with a poem she always keeps posted somewhere close. Here are a few lines from that poem, titled What Cancer Can’t Do:
Cancer is so limited
It cannot cripple love
It cannot eat away peace
It cannot silence courage
It cannot invade the soul
It cannot kill my friendships
It cannot shatter hope.
Donate online to Kids’ Cancer Research Foundation or send checks to 1150 Fuller Road, San Luis Obispo, 93401. Frank Kalman can be reached at 805-540-7682.